Thursday, January 10, 2013

New Year and New Beginnings- Living with Spinal Muscular Atrophy



The holidays are over for 2012. What a year it had been. We got through it and ready to take on another one.
We had deaths, births, illnesses, surgery and so many things go on this past year. Taking a look back I take a deep breath and think wow, Its  2013 where has the years gone?
Its sad another year has come to an end  Its exciting that we have a new year to maybe start over some things we tried to take care of.
I have to get busy and get my bows going again. I have been so busy with Lizzy I have not been able to do much as far as extra things like that.  I will get busy here soon as get some sewing done for my mom and bows started. With the flu map and how wide spread looks like we will be staying home even more than usual.
 Lizzy has been "high maintenance" since she turned 8. Its attention she seem to want a lot of .  She doesn't like to give me a break . She needs to be entertained because the words" I am bored" come frequently from her mouth these days. Her new power chair has been life changing the past few weeks. She is strong enough since her surgery to be in it 4-5+ hours a day and possibly more. She is like a different kid while in it. DR. H really made her quality of life so much better. Its so great to see her so controlling more of her life. "Sigh" Life seems so good just to watch her.
1/7/2013
We have all had that "Viral Bronchitis Crude".  I had it for two weeks. Took my ol time remedy of Cayenne Pepper, ginger, honey,water and organic cider vinegar for 4 days . It took my sore throat away helped me get the phlegm up . I went to the doc and I was put on Zpack. I could not get over the chest congestion. Felt like I had a Sumo wrestler was sitting on my chest. Christen has had it for over two weeks and Paul is on week two with dizziness and so very sick . He has been to the doctor twice and I am so worried about him  his stubborn grumpy self refuses to go back. I am afraid it turned into Pneumonia..... Lizzy was sick for two weeks also but we kept her illness from going to her chest but it did take two antibiotics to get her over it. I pray she does not get it back from Paul. He needs to get a shower, change his germ filled clothes and let me change his sheets. What makes men to darn stubborn? He makes me so mad!!!
Lizzy's BFF was life flighted to Madison with RSV. Please add her to your prayers!! Her name is Sophia Salus.
There is something I need to write about. I have a very strong bond with my family and want to spend the Christmas holiday with them at least one day. You never know who will not be here next Christmas.  Last Christmas we were all sick and could not have Christmas Eve and Christmas Day with the family. Then in June my step-father passed away. Who knew? You know you need to spend as much time as you can with family. We had plans this year as usual to have Christmas Eve together with my mom,our kids and grand kids at Dawn and Jeff's. Its not about the gifts its about spending family together. It was planned on Thanksgiving. Well, this year one of the "soon to be relatives" got down right hurtful right along with her parents plastering terrible things all across face book that were untrue and really caused a lot of issues from being so childish and rude. The things that were said were so terrible and untrue. It was like middle school drama and uncalled for. You know..... I am just done trying with her period. I have enough going on and my life and you can only try so much. If she does not want to be a part of our family there is nothing we can do about it. I pray about it often . I have given it to God. Just remember family is so important but if an outsider comes in and causes so much drama you have to try to get it worked out if you can. Sometimes its so impossible you just need to let it go. You did everything you could to make things right and they still will not budge then is that is all you can do.
On a good note we are still here. Life is never dull with Lizzy that is a sure thing. She just told me this morning" she thinks she needs a bra." I was shocked yes but she is getting older!! But...... a bra?  She is nine!! LOL  Never dull with her,  as I said.
Thank you to my dear friends that helped us again this year get through the year. I can never thank you enough for your kindness and caring!! I thank my mother in law for her generous Christmas gift that helped pay to get the van fixed. Its broke down the Sunday before Christmas and needed a new fuel pump. I think prayers and believing in miracles is what get us through!!
I will close wishing every one a Happy Healthy New Year!!
"We believe in miracles because we live with one!!"
Keep us in your prayers!!
www.our-sma-angels.com/elizabeth

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